Abstract
The achievements of improved service delivery and consumer outcomes have been important themes underpinning the National Mental Health Strategy during the last decade in Australia [1]. As a consequence, work has been undertaken to identify appropriate outcomes and suitable measures, then to examine their utility for routine outcome assessment in mental health services (e.g. [2–4]). Andrews et al. [2] defined consumer outcome broadly as ‘the effect on a patient's health status that is attributable to an intervention’ (p.12). However, Stedman et al. [3] and Trauer [5] point out that viewing outcome in terms of change over time may be more helpful, given that attributing change to specific interventions is difficult. Potential positive consumer outcomes may include symptom reduction, improved functioning, better quality of life, reduced risk and satisfaction with service provision. Consultation with service providers, carer and consumer groups in Australia has suggested that, although each is important for outcome measurement, functioning (as contributing to disability) and quality of life are rated as significantly more important than symptoms, or consumer satisfaction [2], pp.29,38]. This is consistent with the view that recovery is concerned with regaining a sense of self and purpose beyond symptoms or disability, rather than recovery from the illness itself [6–8]. Active steps towards recovery are subjectively experienced through participation in ordinary everyday situations and occupations that provide structure, meaning and a sense of direction in day-to-day living [7–9]. Thus, improvement in functioning and the process of recovering appear intimately linked. Consequently, as Anthony [6] argued, mental health services need to be concerned with how the recipients of services function to better support their recovery.
Why focus on functioning?
Consistent with this focus, the use of functional measures is recommended as part of the regular assessment and review of consumers' progress in Australia's National Standards for Mental Health Services [10]. This requires appropriate tools for assessing functioning, whether to develop individual care plans, monitor individual outcomes, or to evaluate services from a functional perspective. Many assessments of functioning, and the related concepts of disability and quality of life, have been developed, as recent efforts to identify suitable measures for routine outcome assessment illustrate [2, 3]. Despite their frequent use, these concepts, and the distinctions between them, are poorly defined [11–13]. This lack of conceptual clarity raises questions about what is focused on, and whose viewpoint is considered, which present important challenges in developing tools to measure functional outcomes. Functional measures that are to be used for consumer outcome assessments need to be applicable, acceptable and practical to administer routinely in mental health services, as well as reliable, valid and sensitive to change [2, 3]. Therefore, greater clarity about what should be assessed, as well as by what means, could make an important contribution to the refinement of consumer outcome measures, a key goal within the Second National Mental Health Plan [1]. This paper reviews the World Health Organization's classifications of functioning, global and multidimensional approaches to functional assessment and their implications for the assessment of functioning as part of consumer outcome measurement. The importance of consumers' perspectives for understanding functioning is identified, and a range of strategies proposed for advancing current understanding of functioning, and functional assessment in mental health practice.
World Health Organization classifications of functioning
The World Health Organization's original classification of the functional consequences of disease (ICIDH) [14] distinguished physiological and cognitive capacities, ability to perform tasks and ability to maintain roles as different aspects of functioning. These can be related to Engel's [15] levels of system functioning: organ, personal, and social levels respectively, from which the biopsychosocial model used in psychiatry originated. This classification has probably been most influential in psychiatric rehabilitation [6], but has attracted criticism. Notably, the concepts of impairment, disability and handicap lacked adequate definitions to clearly distinguish between them, conceptually and operationally, as well as often being normatively defined [16]. For example, ratings of functioning in the World Health Organization Short Disability Assessment Schedule (WHO DAS-S), based on ICIDH, were evaluated against presumed normal functioning [17]. Wiersma [16] also argued that the ICIDH classification system implied a hierarchical approach to considering the functional consequences of illness, yet relationships between these dimensions are complex and not unidirectional, as, for example, longitudinal outcomes for persons with schizophrenia illustrate (e.g. [18]). The use of ICIDH in psychiatry is further complicated when the distinctions between mental illness itself and its consequences are blurred [19].
Recent revision of ICIDH has sought to address these shortcomings [19]. For ICIDH-2 [20], the language chosen is intended to be neutral and universal, describing both the positive and negative aspects of dimensions of human functioning. The ICIDH-2 dimensions are impairment of bodily structures or functions; activity and activity limitations, defined as the nature and extent of activities that a person actually performs; and participation and participation restrictions, defined as the nature and extent of a person's involvement in life situations. A person's health condition, personal characteristics, and physical, social and attitudinal factors are seen as interacting with each dimension. Operational criteria for defining each dimension are likely to require further refinement. For example, activity is a broad-ranging dimension, encompassing the performance of simple actions and complex tasks. The distinction between performance of, and participation in, activities may also be quite subtle, albeit that the former emphasizes observable actions, while the latter relates more to societal barriers, such as stigma [19]. Despite these issues, the interactions between these dimensions are acknowledged as complex, bidirectional and dynamic [20], consistent with systems perspectives, in which functioning is viewed as depending on individuals' capacities and abilities, and their interactions with physical, social and cultural environments (e.g. [21]). The ICIDH-2 also draws attention to the interdisciplinary knowledge base needed to understand functioning. This means that, as a conceptual framework, it has potential for bringing together the different ways in which functioning is framed among the health professions, as well as for selecting domains to measure in research and evaluation. The lack of such a framework has hampered the development of functional measures, as seen if current global, multidimensional and unidimensional approaches to assessing functioning are reviewed.
Global functioning
The notion of global functioning is frequently used to measure longitudinal and treatment outcome in the mental health field, reflecting efforts to encapsulate various dimensions of functioning in one scale. An assumption underpinning global function scales, a review of which can be found in Phelan et al. [22], is that it is valid to aggregate various functional dimensions. To illustrate, one widely known global function scale is the Global Assessment of Functioning (GAF), part of the Diagnostic and Statistical Manual (DSM) multi-axial diagnosis [23], in which social and vocational domains of functioning are combined with symptoms to give one aggregate score. For some purposes, an overall measure of functioning across domains may be useful, however, aggregate scores may be quite different depending on the domains included in global measures [24]. In addition, when global measures such as the GAF are used, symptomatology and dysfunction in everyday life cannot be distinguished, introducing measurement redundancy [12] and meaning that change in functioning, as distinct from symptomatic improvement, or within different domains, is difficult to assess [25]. Thus, improvements in functioning may go undetected, particularly when they occur within different domains at varying rates [26], as, for example, seems to occur for people with schizophrenia (e.g. [18, 27]). So, global function measures are less useful for identifying functional difficulties, or improvements within specific domains of functioning [26]. Indeed, they may give the false impression of measuring functional domains, as illustrated by apparent problems with rating functioning with the revised GAF, in which the symptom domain has been removed [28]. Given the multiplicity of domains that must be measured to assess functioning [26], as illustrated by ICIDH-2 [20], a single score cannot effectively capture all of them, especially when various stakeholders attribute differing importance to these domains [26, 28].
More recently, multidimensional approaches to outcome measurement have been favoured [5, 26]. This approach is exemplified by the Health of the Nation Outcome Scales (HoNOS) [29], developed in the UK for service monitoring and evaluation [30]. In Australia, it has been recommended for routine consumer outcome measurement in mental health services from a service provider perspective [2, 3] and its applicability explored through a number of projects (e.g. [4]). The HoNOS comprises 12 scales that separately assess symptoms, behaviours, impairments and functioning. However, of its four scales concerned with aspects of functioning (i.e. problems making social relationships, problems with activities of daily living, problems with living conditions and problems with occupation and activities), the latter two appear least reliable [4, 31]. This is perhaps because it is more difficult to rate some areas of a person's functioning in clinical practice with limited knowledge of their social context [4, 31]. As Trauer et al. point out [4], these scales are conceptually complex, and so may be varyingly understood within teams. Accordingly, ratings may be based on differing views of what is deemed important, and it is difficult to rate these complex areas as single items. Hence, measures that focus more specifically on functioning and disability, like the Life Skills Profile (LSP) [32], and use several items to capture specific aspects of functioning have some advantages in this respect.
Dimensions of functioning
Given that valid measures of functioning, whether global or multidimensional, rely on the inclusion of relevant dimensions, it is worth further reviewing how specific domains of functioning are considered and represented. A vast number of assessments that relate to various domains of functioning have been developed, as reviews illustrate (e.g. [16, 24, 33]). They reflect different ways of framing functioning, implicit in the emphasis placed on symptoms and impairments, problem behaviours, specific skills domains (such as community living skills, social or work skills) and role performance. The distinctions between symptomatology and functioning, and between domains of functioning are also often blurred in their usage [24]. Hence, as with global function scales, these tools may include items that either overtly or implicitly link everyday functioning and psychiatric symptoms. Two examples of informant measures of social functioning illustrate this. Social behaviour rating scales, such as the Social Behaviour Schedule (SBS) [34] include both behavioural items and indirect reports of a person's symptoms by an informant [26, 35]. Similarly, the LSP [32], which is widely known [3] and used in mental health services research (e.g. [36, 37]) in Australia, predominantly assesses clients' behaviours and social problems. However, it includes some items, such as those concerning talking about strange ideas and disordered speech, which can be seen as behavioural manifestations of thinking disturbances, or indirect symptom assessments [26].
These examples illustrate recognized difficulties with distinguishing mental illness and its consequences [19], but also illustrate assumptions about closer links between diagnosis (primarily based on symptoms) and functioning than may be evident [16]. These assumptions restrict the suitability of tools such as the SBS and the LSP as assessments of functioning across diagnostic groups. Similarly, functional tools often reflect assumptions about the relevance of certain domains of functioning to specific diagnostic groups. One example is the limited attention given to physical aspects of performance, as if implying that only cognitive and social aspects of functioning are relevant to understanding functioning of people with mental illnesses [38]. So, the key issues here are that assumptions about mental illnesses and their courses have influenced how tools used to assess functioning are conceptualized, and tools that better represent the different dimensions of functioning are much needed.
Person–environment interaction
Another aspect of functioning that merits more consideration is its context dependence, as acknowledged in ICIDH-2 [20]. Psychosocial rehabilitation models particularly have drawn attention to viewing functioning in terms of person–environment fit [6]. Hence, as Vorspan [39] observed in a Clubhouse psychosocial rehabilitation programme, having the necessary equipment to accomplish a task, and being in an environment where the use of one's skills is relevant, are as important as the skills themselves. Alternatively framed, this reflects an understanding of functioning in terms of the person's occupations: the everyday activities of which life is constituted, though not (as often assumed) limited to categories of work activity. In these terms, occupational performance refers to ‘the meaningful doing of actions in time’ [40], p.13] that is an outcome of interactions between a person engaged in occupations and his or her environment [21]. Consequently, functioning concerns the quality of a person's participation in personally and culturally meaningful occupations, for which an understanding of person–environment interactions is essential.
Few functional assessments used in the mental health field reflect the contextual nature of functioning. Despite this, advantages of giving greater attention to person–environment interactions include clarifying the relationships between symptoms, functioning and the environment. For example, although reactivity of so-called ‘negative symptoms’ to alterations in environmental contingencies has been observed since the seminal work of Wing and Brown [41], the precise role of the environment in creating, or maintaining such ‘symptoms’ is not well established (e.g. [42]). Therefore, assessments of person–environment interactions provide a means to identify aspects of the environment that maintain such symptoms [43, 44], as well as those that create other barriers to effective functioning. Hence, approaches that recontextualize mental health problems as human experiences occurring in interactions between persons and their physical, social and cultural environments are much needed [44].
Consumer perspectives on functioning
A further theme evident in reviewing how functioning is conceptualized and operationalized in approaches to functional assessments is that consumers' perspectives on functioning are often not integral to functional assessments. For example, professional concerns, and assessment tools reflecting them, are more likely to emphasize deficiencies and service-related needs [9], whereas consumers often place greater importance on capabilities, creating a life with structure and meaning [45], their living situations and relationships [46]. Further, people with major difficulties performing some tasks and social roles also have important abilities and resources for community living [9, 17], yet the strengths and assets of individuals and their communities tend to receive less attention [9]. In addition, while it is relatively easy to detect large changes in functioning, such as getting a job, which can be of great importance, it should not be assumed that in their absence no change has occurred. More subtle, subjective changes in functioning may be occurring that have importance, for example, in creating or maintaining hope. Current lack of attention to subjective experiences of functioning in functional assessments means the meaning and value of such changes from consumers' perspectives will tend to be overlooked.
To summarize the issues identified, meaningful consideration of functioning as an outcome requires functional assessments that capture relevant domains, and recognize meaningful functional changes if better functional tools for use in research and clinical practice are to be developed. This will require a conceptual view of functioning that incorporates meaning, temporality and the coexistence of function and dysfunction [47], goes beyond the identification of incapacities and skills deficits, and takes account of persons in their own contexts [44, 48].
Towards developing a better conceptual understanding of functioning
Consumers' perspectives have been largely missing, yet could make an important contribution to current understanding of functioning and functional outcome. Indeed, ‘there is something seriously missing in a field of mental illness that does not attend closely and broadly to patients' subjective experiences’ [49], p.177]. This applies as much to how we conceptualize function as to other aspects of consumers' lives and experiences that we seek to understand. People with mental illness make their own sense of what is happening to them, develop expertise about those activities that are important in their lives, and about their experiences of doing, or trying to do, these activities [50]. So, although consumers' insight and expectations are potentially complicating issues [26], and consumers' perspectives are not the only views that should be relied on, attending to consumers' subjective experiences can help us gain greater insights into their worlds. Therefore, their expertise would substantially help to overcome one limitation of many functional assessments: that consumers' perspectives, values and the real life contexts in which they live are insufficiently considered [48, 51].
Efforts are increasingly being made to recognize the legitimate voices of consumers (i.e. individuals with direct experience of mental health care), as well as carers, as important stakeholders in shaping mental health practice, and to develop tools that are more responsive to their views. For example, needs assessments have tried to capture consumers' views of their needs for service provision [52], and satisfaction surveys seek information about consumers' service preferences and the quality of services received. Each method enables consumers' views to be incorporated in mental health service evaluation [53], but neither method adequately explores consumer perspectives on functioning. Similarly, the proposed outcome measures for routine use in mental health services in Australia allow for consumer responses, but none of the tools reflect a consumer perspective. Consumers' viewpoints are infrequently reflected in the design of outcome measures [53], which have generally tended to be ‘dominated by professional perspectives’ [54], p.187]. Until recently, consumer involvement in developing functional assessment tools has also been limited.
To develop better functional tools that address the issues identified in this paper is challenging, both conceptually and methodologically. Conceptually, it requires a shift in our knowledge base towards a more equal reflection of consumer and professional expertise. Greater knowledge of the everyday life experiences of persons with mental illness could enhance the face validity of tools since it would allow the assumptions, upon which existing tools have been based, to be evaluated against lived experience. Methodologically, the challenges in developing tools include increasing their sensitivity to significant change on meaningful dimensions of functioning, and the relevance of the domains assessed. Both the validity and sensitivity of functional assessment tools could be improved by greater involvement of consumers in such instrument development. For instance, the inclusion of consumers as consultants on instrument design teams would add to the perspectives considered in developing questions to ask, or items to include in instruments assessing functioning. This could be particularly helpful for identifying assumptions about diagnosis, prognosis and particular domains of functioning that potentially limit the usefulness of some existing tools. Multidimensional tools also appear to be preferable to global function scales, to encompass discrete assessment of functioning across a range of domains, as well as to increase the chance of capturing change [5]. Nevertheless, symptoms and functional domains need to be clearly separated and here too the dilemmas about which functional domains should be included [46] need to be addressed. Consequently, the innovative use of quantitative and qualitative research methodologies is necessary as a basis for gaining increased understanding of functioning and improving instrument development. The scope of potential contributions of different methodologies is illustrated by considering three approaches: an approach to contextualized functional assessment, the use of a time sampling methodology for detailed exploration of person–environment interactions, and the potential usefulness of qualitative research.
Contextualized functional assessment
One approach to contextual assessment of functioning is exemplified by the Assessment of Motor and Process Skills (AMPS) [55], an occupational therapy assessment increasingly used in mental health practice in Australia. Both a person's overall ability in personal care and instrumental activities of daily living, and the quality of the person's skill are assessed while they perform chosen, meaningful and culturally relevant daily living tasks in a familiar setting [38, 55]. Hence, personal factors, such as choice and meaning, as well as the environmental context of performance are incorporated in the assessment process [38, 55, 56]. A many-faceted Rasch measurement model was used to develop this tool, enabling ordinal raw scores obtained from the assessment to be converted to equal-interval linear ability measures [55]. This approach has permitted the calibration of a range of simple and complex daily living tasks, as well as calibration of motor and process actions required to complete them [55, 56]. Consequently, the relative difficulty or challenge of the tasks performed, as well as the motor and process actions required, are known [55]. The AMPS also has demonstrated validity across many diagnostic groups and cultures (e.g. [38, 56]). The AMPS could make an important contribution in monitoring progress and outcome in mental health practice when individuals' occupational performance in activities of daily living is of concern. Its measurement approach may also have wider applicability to the development of contextualized assessments of performance in other life domains.
Exploration of person–environment interactions
Another approach that might be used to understand the interactions between persons and their environments is the Experience Sampling Method (ESM) [57]. This is an on-the-spot sampling technique which gathers information in real time, as opposed to retrospectively, using electronic pager technology. Self-reports of people's subjective experiences of daily life (i.e. thoughts, feelings, moods), as well as behaviours and the settings in which they occur, can be collected. This approach has been used to study the occurrence and experience of symptoms of mental illness in daily life [43, 44], as well as subjective experiences of occupations and social interaction in everyday life contexts [57, 58]. Therefore, it offers a potentially useful approach to studying person– environment interactions and, hence, to exploring the often subtle or complex ways in which physical and social environments either support, or constrain functioning.
The ESM can provide detailed information about subjective experiences and functioning in context, for example by highlighting links between social contexts, perceived skills and challenges of activities and symptom experiences [44, 58]. So, while ESM is unlikely to have direct applicability for routine consumer outcome measurement, this methodology might help to identify contextual aspects of functioning that need to be considered in such measures.
Contributions of qualitative methodologies
Qualitative research methods, in general, have some advantages for developing understanding of the personal meanings and significance of everyday life experiences from consumers' viewpoints, in that they place emphasis on detailed description, consideration of meaning and context. Hence, they are useful for exploring and gaining an enhanced understanding of previously poorly understood phenomena. Given current lack of knowledge about people's subjective experience of functioning, qualitative research might usefully generate more detailed understanding of the lived experiences of persons with mental illness [51, 53]. Such detailed descriptions can help to build theory or illuminate issues, which could be used to inform the design of tools, or to explore their relevance in different contexts [19]. For example, Davidson et al. [53] reviewed eight studies exploring consumer perspectives on deinstitutionalization, which highlighted a range of consumers' concerns that are relevant to notions of functioning, including freedom, autonomy, privacy, daily structure, opportunity for meaningful activity and relationships. Yet, as they pointed out, few of these are reflected in standard outcome measures or functional assessments, but deserve consideration in the further development of tools to assess consumer functioning and outcomes. Furthermore, combining qualitative data gathering, with the use of existing quantitative measures, would both amplify the voice of the consumer, and provide rich contextual data, with which to make sense of quantitative data. The approach is recognized as important in service evaluation [3, 59]. It could also be used, in combination with existing functional tools for research, clinical practice and evaluation, to guide the refinement of the tools themselves.
Qualitative research, then, has several potential uses for enhancing our understanding of functioning, as well as tool development. However, while aiming to generate findings that reflect participants' (emic) viewpoints, qualitative research methodologies vary in the extent to which all stakeholders' perspectives are incorporated. Participatory action research is the methodology that is most inclusive of relevant stakeholders at all stages in the inquiry process. Hence, it aims to legitimize and reflect participants' views in the study design, implementation and the interpretation of findings, offering a process for collaboration among consumers, staff and other key stakeholders in research activities. Applying this methodology in mental health service evaluation means consumers, as well as other stakeholders, become active participants in the research process, shaping the questions asked and methods used, as well as the findings [51, 53, 60]. The potential of participatory action research for effective incorporation of consumer perspectives in evaluation and research activities is recognized, albeit that its use requires substantial shifts from the ways that research has traditionally been conducted [60, 61]. Its use in instrument development has received little attention, FUNCTIONING AND OUTCOME MEASUREMENT 96 despite offering a process for drawing on consumers' expertise about their functioning in everyday life in the development of functional assessment tools, without excluding the perspectives of other relevant stakeholders, such as family, informal caregivers and professional service providers.
Conclusion
Improvement in functioning is an important part of recovering for people with prolonged mental illness. Mental health professionals and services often gauge recovery and service outcomes by focusing on different domains of functioning, and not necessarily on the functional issues of most concern to consumers. Critical examination of the concept of functioning and its application in research and clinical practice within the mental health field is overdue. It is essential if more sensitive and appropriate means are to be found to evaluate individual and service outcomes in functional terms. Innovative approaches to studying and measuring functioning are required to enhance our understanding of the processes involved in recovering, and to develop more sophisticated explanatory models of functioning, if we are to meaningfully measure consumer outcome in functional terms.
Footnotes
Acknowledgements
Earlier work that has contributed to this paper was supported in part by grants from the Faculty of Health Sciences, La Trobe University, and Human Services Victoria.